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Transforming the Culture of Patient Care

Daniel Z. Sands, MD, MPHAssistant Clinical Professor of Medicine,

Harvard Medical SchoolChairman and Co-Founder,

Society for Participatory MedicineBoston, MA

@DrDannySands

Healthcare As Collaboration:Using Participatory Medicine to Cure

What Ails Healthcaree-Patient Dave deBronkart

Patient Engagement EvangelistChair Emeritus and Co-Founder,

Society for Participatory MedicineNashua, NH

@ePatientDave

@DrDannySands @ePatientDave

@DrDannySands @ePatientDave

@DrDannySands @ePatientDave

@DrDannySands @ePatientDave

@DrDannySands @ePatientDave

@DrDannySands @ePatientDave

Role Play 1:December 2006

(before diagnosis)

@DrDannySands @ePatientDave

Our

• Asynchronous: enables efficient communication

• Cost-effective • Benefits both patients and

physicians• Helps build our relationship• Can even be a channel for care

delivery• Best practices are well defined

e-Messaging Supports Collaboration

Sources: Kane B, Sands DZ, JAMIA 1998. Delbanco T, Sands DZ, NEJM 2004.@DrDannySands @ePatientDave

1998

Alternate version that I’d like to use

Best Practice Mnemonics for EHR Use: “HUMAN” and “LEVEL”

Source: Permanente Federation

2004 c/o Larry Garber, MD,

and Wei Wei Lee, MD

H Honor the “Golden Minute,” with first minutes tech-free

U Use the (equilateral) triangle of trust

M Maximize patient interaction

A Acquaint yourself with patient record, ideally before the visit

N Nix the technology and keep eye contact (hands off keyboard)

when patient discussing sensitive topic

L Let the patient look on

E Eye contact with patient

V Value the computer as a tool

E Explain what you are doing as you do it

L Log off and tell the patient@DrDannySands @ePatientDave

And the other graphic (level) has no meaning unless explained

Seek (or welcome!) your patient's participation.

Help your patient explore and compare treatment options.

Assess your patient's values and preferences.

Reach a decision with your patient.

Evaluate how it works out.

The SHARE Approach:5 Essential “Steps up the Stairs” of Shared Decision Making

Based on https://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/@DrDannySands @ePatientDave

the graphic made no sense so it was confusing

@DrDannySands @ePatientDaveSource: KP.org screenshots and data courtesy of Kate Christensen, MD

Real-World Patient Experience

This is too cool. It's almost SILLY that things can be this easy. I am having a very good patient/customer experience so far.

@DrDannySands @ePatientDave

Affective Impact: 61M Minister with DM and Chronic Pain

I have a lot of medical issues. This email system has left me feeling comfortable and in good hands! Otherwise, I would feel as cold, depleted, and alone, as the lifeless tree in my front yard in the deepest of winter!

@DrDannySands @ePatientDave

2007: My “Incidental Finding”Routine shoulder x-ray, Jan. 2, 2007

�Your shoulderwill be fine …but there's something in your lung�

@DrDannySands @ePatientDave

Multiple Tumors In Both Lungs

@DrDannySands @ePatientDave

E-Patient Activity:Researching My Condition

@DrDannySands @ePatientDave

Classic Stage IV, Grade 4

Renal Cell Carcinoma

Median Survival:24 weeks

@DrDannySands @ePatientDave

Facing the grave

My mother’s face

My daughter

@DrDannySands @ePatientDave

After the shockyou’re left with the questions:

What are my options?What can I do?

@DrDannySands @ePatientDave

@DrDannySands @ePatientDave

Role Play 2:January 2007

(after diagnosis)

Complementary Information Types

General(information

about my disease)

Specific(my health

information)Peer

Info/Support(experience and

knowledge of others like me)

@DrDannySands @ePatientDave

ìPierre Lévy, PhDPhilosopher, cultural theorist, and media scholar, University of Ottawa, 1997

No one knows everything. Everyone knows something. All knowledge resides in networks.

This photo by cpfl cultura is licensed under a Creative Commons Attribution 2.0 Generic License.

@DrDannySands @ePatientDave

My patient peers told me:

•This is an uncommon disease –get to a hospital that does a lot of cases

•There’s no cure, but HDIL-2 sometimes works.oWhen it does, about half the time it’s permanentoThe side effects are severe.

•Don’t let them give you anything else first•Here are four doctors in your area who do it

@DrDannySands @ePatientDave

@DrDannySands @ePatientDave

@DrDannySands @ePatientDave

@DrDannySands @ePatientDave

OpenCommunication

Shared Decisions

Mutual Respect

Information Sharing

Engagement

Asking Tacit Approval

Honest Disclosures

@DrDannySands @ePatientDave

Shifting Paradigm?

Information asymmetry•Physician as oracle•Comfortable•A burden?

Information symmetry•Physician as partner•Threatening vs. liberating•Physician as healer

@DrDannySands @ePatientDave

But What About Power Asymmetry?

Hierarchy Collaborative

Courtesy of Marge Benham-Hutchins @MargeBHutch

e-Patients: It’s About Engagement!

@DrDannySands @ePatientDave

eEngagedEquippedEmpoweredEducatedEnlightened

Humble Pie

@DrDannySands @ePatientDave

Life In Traditional Site

of Care

Life Outside Health Care

System

Hugo’s slide quotes Doc Tom.

Beyond the Visit: Self-Monitoring Improves Outcomes

@DrDannySands @ePatientDave

Withings Wi-Fi scalePre-Diabetes Diagnosis

Self-Monitoring Enables Change and Improvement

@DrDannySands @ePatientDave

Withings Wi-Fi scalePre-Diabetes DiagnosisFitness wristband & heart bandYMCA Diabetes Prevention Program(food training & physical activity)MyFitnessPal diet tracking appStrong support from spouse

ParticipatoryMedicine.org

Society for Participatory Medicine (“SPM”)

Community Advocacy Research Education

@DrDannySands @ePatientDave

@DrDannySands @ePatientDave

October 2007 May 2009

Achieving Care’s Potential is ImportantDecember 2006

@DrDannySands @ePatientDave

ìSlack WV. Patient Counseling by Computer, in Zeog S, Yarnall S, eds. The Changing Health Care Team Seattle: Medical Communications and Services Association, 1976, 108-11.

@DrDannySands @ePatientDave

[T]he largest and least utilized health care resource is the patient him/herself.

Let’s Transform the Culture of Care!

Dave@ePatientDave.comePatientDave.com

@ePatientDave

Danny@DrDannySands.comDrDannySands.com

@DrDannySands

Additional material at: S4PM.info/resources

@DrDannySands @ePatientDave